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mammaP

mammaP

Due to the unexpected response the survey has been extended until 28 August.

A huge thank you to everyone who has taken part and filled it in. Also thank you to NZ11 who has been tirelessly working to get as many people as possible to join in this important study. Hopefully there will be many more in the not too distant future.

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nz11

nz11

I did my utmost in the survey to explain that even though the numbers of responses may not be huge, there are millions affected by use and withdrawal of these drugs who have not even come across the survey and so their voices have not been heard. Just wanted to bring attention to the magnitude of this situation.

I told them about when I reduced from 100mg to 50mg of Pristiq and wasn't about to type after 3 weeks and that after updosing within 4 hours my brain fog was clearing and I could type again. I included that I was a professional typist with high speed and accuracy for 40+ years so that they would recognise that I had a bench mark.

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ChessieCat

ChessieCat

I would be surprised if anyone objected to it. I think in this case the opposite would be the case in that if they hadn't heard about it until later than would have been annoyed at not having the opportunity.

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Shep

Shep

I have a friend who's active in advocacy for benzo withdrawal and she was in contact with the researchers Friday and they said so far, they have received 220 responses, 80 from the UK. And that was over two days. Hopefully, more will come in over the next week.

Just an FYI that the survey will close soon:

The survey opens at 9am on 10 August 2017 will close at 5pm on 24 August 2017 BST.

On 8/21/2017 at 7:10 PM, Shep said:

Another update on the count of people who've completed it:

The survey now has 1,000 responses, 250 of these from the UK.

Just a reminder: The survey will close at 5pm on 24 August 2017 BST.

On 8/23/2017 at 2:37 PM, Shep said:

Continuing on with the updates, here is the latest:

The survey now has 1,400 responses, 300 from the UK and 660 from the US and there is now just under 24 hours left to respond.

Excellent work! And hopefully more will come in over the next 24 hours.

And we are now at 1,480 responses.

I really think Alto's mass email helped, as well as NZ11's work going door-to-door on the forum making sure as many people as possible knew about the survey.

Thanks to everyone who filled out the survey. Hopefully, even more will come in over the weekend.

1500 emails doesn't sound a lot but lets not forget this was in 2002. I didn't even have my own personal computer till 2009 (yes I know I was slower than most). I, and I'm sure many others did not have emails in 2002. So 1500 emails in 2002 in context was a massive response.

We are living in a different world in 2017 that's for sure tell someone who asks for an email address that you don't have one and they will look at you as if you don't have a letterbox or are a member of the flat earth society.

As such approx. 1500 responses to this 2017 survey though better than nothing is very disappointing imo (..where are the 60,000 from back in 2002 ? ) especially in light of the fact that we are at an all time unprecedented high in the prescribing and taking of these drugs. I cant help but feel medicines dirtiest little secret - ssri withdrawal , remains just that.

I can only guess maybe the survey wasn't advertised enough or prominently. Just one advert in prime time tv time may have been enough to trigger a much bigger response.

Perhaps another problem here is many people have bought into the false narrative by doctors calling wdl symptoms a M.I. and the words 'withdrawal symptoms' may not mean anything to addicted millions who have been hoodwinked by the misinformation for we know 'withdrawal' doesn't exist in the doctors medical dictionary.

In reading the above article link I notice the SJ quote and cant help but think the SJ response in this latest BBC programme was very restrained in light of what she knows.

"What we reveal goes far beyond Seroxat "Shelley Jofre

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AliG

AliG

It's all good and there is no need to be despondent, NZ. Would we like more? Well - of course, but it is what it is.We have all done our best and you really have done a champion job. IT ALL COUNTS - every single person who has answered and replied to this survey has helped to create an awareness and with that maybe a long term solution as well. We can only just keep chipping away at the foundation of this problem - trying to get the word out in every single way that we can, however large or small that may be.

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Shep

Shep

New here. Do you have any information on when they will release the survey results?

thanks,

JS

I'm sorry, JS, the only information I have are the number of people who filled out the survey. I'm not sure when the results will be released. I'm sure it will take awhile to sort through all of the information, especially since it's for an academic paper.

The survey was over on the CEPUK website, which has Facebook and Twitter links, if you wish to follow. Hopefully, they will post and Tweet when the survey result is available.

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JS11

JS11

I'm sorry, JS, the only information I have are the number of people who filled out the survey. I'm not sure when the results will be released. I'm sure it will take awhile to sort through all of the information, especially since it's for an academic paper.

The survey was over on the CEPUK website, which has Facebook and Twitter links, if you wish to follow. Hopefully, they will post and Tweet when the survey result is available.

Thank you, Shep. I think I got the survey on this website as I know I participated. A positive step, but yes, academia does take a lot of time. Hopefully, they will make a big fuss when it is released. I have found some good articles in the British Guardian about Anti-depressant withdrawal. The more it is out there, the more people will hopefully become aware.

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ChessieCat

ChessieCat

Considering the number of people that we are aware of, this number is disappointing. However, it's a start and better than nothing. Hopefully the information that they obtained was of a high quality and will get attention.

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nz11

nz11

I only had one wdl related appointment with my doctor in which I sort answers for the hell that was unfolding I was told such nonsense that I never had another appointment and realized the safest thing to do was keep away from these people and survive it myself. Gee I must have really dragged the average down...so its probably much higher than 10 then if one removes outliers like me....the financial cost to people must be truly staggering.

I cant help but feel that the 65% is low ...are you telling me that 35% of people were fully informed...come on!! ..you'd be pushing it if you said that 5% were informed !

Being told the risks are minor and a dry mouth at worst is not being informed.

"The responses we received were as moving and informative as they were upsetting. The true scale of the suffering generated by injudicious prescribing and medication harms was evident on every page."

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Shep

Shep

I cant help but feel that the 65% is low ...are you telling me that 35% of people were fully informed...come on!! ..you'd be pushing it if you said that 5% were informed !

Being told the risks are minor and a dry mouth at worst is not being informed.

I hear you on that, NZ. That can't be right.

I think the fault in this lies with the way the survey was written, though. For some people, especially those who are still tapering, having a doctor willing to go along with a slow and gradual taper may mean all the difference in the world - at the time. For these people, that may be enough to be considered informed.

I would have preferred to be asked a less vague question and asked more specific questions such as:

1. Were you told about akathesia and how severe this could get (even to the point of suicide)?

2. Were you told about PSSD, not only in the effect it has on sex drive, but also the ability to fall in love and stay in love? Were you told that many couples break up during withdrawal?

3. Were you told that ADs actually chronify depression? And cause rapid cycling in those labeled bipolar?

4. Were you told that the chemical imbalance is a lie? That there is no science behind the labels in the DSM and have been linked to culturally-biased forms of social control and that the DSM is financed by the pharmaceutical industry?

5. Were you told about the ghost writing in medical journals?

6. Were you told about the results in Paxil Study 329? About the findings of Martin Harrow's 20 year schizophrenia study?

7. Were you told that antipsychotics shrink the volume of the brain? And that Finland has nearly eradicated schizophrenia by NOT using drugs?

8. Were you told that withdrawal can be debilitating, that tens of thousands of people have lost their jobs, finances, families, and ended up severely disabled for years?

Hindsight is a wonderful thing. But I guarantee that the 'suffering' and 'harms ' spoken off on 'every page' would not have been expected or warned of prior....which actually means 100% were not informed.